Showing posts with label chronic pain. Show all posts
Showing posts with label chronic pain. Show all posts

10 August 2018

Fibromyalgia Friday

Happy Fibromyalgia Friday. Here are some of my favorite new quotes:




Hope these have been encouraging to you. Have a good day.

09 August 2018

Chronic Illness: Dreams and Depression

Happy Thursday my friends. Sometimes I find myself floundering these last 3 1/2 years. Come November it will be 4 years since I first got ill, first with tonsillitis and then chronic fatigue syndrome (later diagnosed as fibromyalgia). 
Since I cannot work nor finish my dissertation, at times I feel very depressed and lost. There were times when I felt especially lost because I could not drive myself outside and was reliant on medical transport to get to the doctor's office or friends to come visit me. Thankfully I have been able to move on from using medical transport and my wheelchair. I can even drive around town on a good day and sit through a theatrical performance. Yes I am usually incapacitated the day after but it's so important to feel some sense of freedom and enjoy opportunities for pleasure. And I don't even know what I would do without my beautiful dogs and family. Their love and support means so much and is able to bring a smile to my face even on the dreariest of days.
But what i meant to say before I got longwinded was that my therapist this week asked me why I could not start working on my dream. At first I thought it was laughable but heck, why not? I might not be as capable as when I was running around London and studying for my degree. But I do have a mind, sluggish as it might be, and so why not do some investigative work and poke around at fulfilling my dreams? Just because one is disabled and incapacitated in many aspects does not mean that I cannot dream and make the most of whatever this is.

Surely there is a purpose, yes?

20 July 2018

Blogging With a Disability

Disclaimer: This post contains affiliate links.

Four years ago I was living life to the fullest believing my dreams were about to explode with rainbows and pixie dust and etcetera. Turning thirty years old I believed that it was going to be the best year of my life. It was indeed a fabulous year in London going to grad school and learning in some of the greatest museums and galleries of the world with an international cast of classmates and new bffs.

Fast forward to November 21, 2014, and I woke up to a nightmare. I could not feel my feet nor fingers. I couldn't see clearly and my eyes were burning for no apparent reason. My brain was overwhelmed in the midst of a fog I could not seem to escape. And worst I could not walk or move without intense pain. I was literally crawling from my bedroom into the kitchen for a glass of water I could hardly even hold. Welcome to my new "normal".

It's been almost four years and while some things have gotten better others have gotten worse. Even my primary physician says I have regressed in several areas. Ah, life.

Dragon Professional Individual for Mac 6.0 (Physical version)Because of my pain in my arms and hands, I can hardly type due to pain and numbness. I try to use Apple's free dictation app for my blog posts, emails and Siri dictation services on my iPhone for my tweets and facebook posts. Unfortunately the Apple dictation app on my MacBook is devious and will constantly delete what I've already dictated, and write things I never said. Talk about wanting to bang my head against the keyboard.

Trying to figure out a way to get Dragon Professional Individual for MAC. Even my therapist is telling me I need to get it... If only it didn't cost so much for the Mac version.

I have tried to look for alternative ways to blog. There's been my attempts at vlogging on YouTube but the setup and then the editing and posting is draining and difficult on the arms and hands and brain.

So here are some of my favorite tips for blogging with a disability:

The most recent tip I have tried is to create several posts in advance and schedule them for future dates. I love this!! It allows me during a "good" hour to create some blog posts that can come out later when I am not necessarily able.

Copy and paste. Nobody says you cannot copy and paste previous work to use as a template. Also when I am sharing calendar information, it is perfectly ordinary to use the script they've created as a starting place.

Do you have any tips? Suggestions?

Until next time,


19 July 2018

WW: Stone Fire Grill

Morning! Day 3 was another success on my weight loss journey.

For breakfast, I tried non-fat Greek yogurt (Trader Joe's) combined with low-fat granola (Trader Joe's) and blueberries.

For lunch, I made a 1/2 baked potato (2 smart points) with non-fat Greek yogurt, broccoli and a dash of parsley and cheddar cheese.

For dinner, the family went out to Stonefire Grill for another weekend family dinner. I must have spent a good half hour agonizing over nutritional facts and smart points. The frustrating thing was that Stonefire Grill does not provide sugar facts on their nutritional pdf which Weight Watchers requires for smart points calculations so I had to make guesses.

TIP: Don't go to the restaurant's website looking for nutritional facts. For some reason the only pdf I could find was the allergen facts.

I ended up getting:
1 petite salad w/ dressing on the side
1 petite tri tip w/o sauce
1 1/2 breadsticks

Like I said, there is no sugar facts so there was some guessing on the smart points (but I did lose weight!) but it looked like 2 points for a petite salad, 7 points for a breadstick and 11 points for a full petite tri tip (with pepper garlic sauce).

The salad and tri tip were split into two portions so I could have some more on another date.


My Goal: 40 pounds
Day 1 Weight Loss: 2.7 pounds

Day 2 Weight Loss: 1.2 pounds

Day 3 Weight Loss: 1.8 pounds
Total Weight Loss: 5.3 pounds (!!!!)

09 July 2018

Fibromyalgia: A Good Day

FYI: For any new readers, thanks for visiting! And many pardons in advance for errors because I use a dictation app to write my posts due to my pain.

After my last post on my Fibromyalgia frustrations you probably are wondering what I would consider a "good day"...

Man, that is a really tough one! Today I was reading an article on questions to ask your doctor about Fibromyalgia and Chronic Fatigue Syndrome (another diagnosis that's been floated around) and I wanted to hurl. It was so sad and depressing to read questions such as whether I should take my medication and when I'm having a good day feeling fine. I wanted to laugh, cry, hurl, et cetera. What gibberish to say that I was having a fine day and didn't any my medication. With my medication I'm lucky enough to feel a level VI pain on a good good day. And Yes I was a deliberate good good day. LOL. But the truth is I don't know what it means anymore to feel fine. I don't know what I mean to say is this too much exercise? I don't know what it means to Question how much is too much. Actually I do know that question. There are times when I wonder are you going grocery shopping on a Saturday with my dad that will have me incapacitated for the rest of the weekend. Or whether going to retirement party at a friends home will be too much and cause me to have anxiety, excessive exhaustion and horrible pain otherwise can be avoided. So yes I do know the latter question but I wish oh yes I wish that I knew the question of can I take my medication on a fine day when I don't feel like I needed. That would be a fabulous day.

But we are speaking in real terms and so I will describe today what a good day is. Yesterday I had a good day. I rested in the morning, Took my medication, petted the dog, did a little Google research of no importance, made lunch, and managed to shower. All before 4 o'clock in afternoon. And this was thankfully a good day and gosh darn it I lost my page again. I am just complained about how much I hated dictation app because I'm always losing my space, having my work deleted, or being transferred to a completely different page that has nothing to do with my. Post. And guess what it happened again. So let's try to keep this short or I might go crazy LOL. So mom suggested we go to see a movie to get out of the heat because our home does not have air conditioning. Heat wave days are the worst especially because of my heat intolerance in combination with the lack of the cool air. So we googled movies playing and I am woefully out of touch with what is playing currently. We decided on Antman, bought our tickets online and headed out to them mall. I am thrilled to say we found a parking spot in the very front of the lot's. Thank God for my handicap placard and for perfect timing. We parked and walked over to the red Robin next to the movies. Somehow I must've been woozy and more uncorrelated on my feet than usual so walking with my cane was quite amusing. Thankfully no one was tripped away needed to our destination in one piece. We were seated at a booth which is always my favorite meaning I can stretchout my legs to the other Seat and propped my elbows and wrist up on the table. Yes I probably would not work in a fine dining restaurant but this was a chain burger restaurant. Perfect for slouching getting comfortable or at least as comfortable as can be in a public environment.

After dinner mom and I went to the movies discovered our seats were upstairs so thank the Lord there was an escalator so up we went. I was doing pretty fine after our dinner so we settled in to the so Called recliner seats which were really not. The good thing about our seats was that because they were in the front row of the balcony I was able to stretch out my legs and I was able to use the armrest for my elbows and wrists. So we settled in and had some good laughs watching Ant-man. Gosh darn it. Fails me once again. Okay back to the story. As far as comfort goes I would rate these chairs a C. They were comfortable like sinking into a couch and had the necessary armrest. Unfortunately they did not recline so my neck and back suffered more than I'd hoped. The tough part was when the movie was over I was pretty week and unbalanced getting up. So took a little maneuvering to get out of my chair and out of the Cinema. We walked slowly back to the car and by the time I had open the passenger door I was counting my lucky stars that moms car was so close. I don't know if I could've walked anymore steps. What's that saying, God only gives you as much as you can handle? Was quite true in our case that evening. So we headed home I grab my ice pack my pillow and laid down to cuddle with my dog as much as he will let me. That my friends is what I would call it a good day. My pain level was primarily at a low of six. I was with my mom. Being with people is always a blessing. I did something different that I can't even remember the last time I did by going to dinner and a movie. I Lived to tell about it. That is a good day.

What is your idea have a good day? Feel free to sharing the comments below as I go get a fresh ice pack and some more medication for my pain LOL. Hey I didn't say life is perfect or even back to what I would call normal but it's something. Days like these I think of when I'm feeling exceptionally frustrated with my situation. Until next time xo.

PS thank you for overlooking the errors due to my using a dictation app.

05 July 2018

VLOG: Chronic Illness + Socialization

Bonjour! Hola!
With the recent holidays just past I thought it was a good time to share about the exhaustion that comes from socializing for anyone with a chronic illness such as Fibromyalgia, Chronic Fatigue Syndrome and/or MS... Think it's easy for someone like me to come out and visit over a bbq? Think again...


01 July 2018

God HAS a plan...

Happy Sunday and 1st of July!
My body is tired, drained and achy which always makes me feel more drained and tired emotionally so if you are like me looking for encouragement here are a few of my favorite quotes:





For more of my favorite quotes check out my Pinterest boards.

20 November 2017

Vlog: A Bad Day

what does a bad day look like?
Don't let the smiles fool you...

22 September 2017

Chronic Illness: Feeling Low?

HI folks. If you are like me, you probably have terrible bouts of loneliness and depression. Not fun. But the good news is that there is always something worth smiling about and worth looking forward to. But we just have to remember, right? That's the tough part.

So hopefully this short video will be encouraging and so will these quotes I have found for you tonight.
YOU ARE NOT ALONE.








xo Joy


16 May 2017

#ChronicPain: Must Have Pants

(c) Champion.
are you in chronic pain like me? do you suffer from trouble walking and getting your legs in pants? if so, I have an excellent option and it's fairly inexpensive so win -win!

Champion's women jersey banded knee pants have two pockets, are made of cotton (some colors do have some polyester in the material), have a draw cord for adjustability, are machine washable, and fall on me (5'2") right below my knee similar to the stock photo.

I love these pants and have them in both Oxford Gray and Black. They are comfy enough for lounging around the house, wear well to physical therapy, and not tacky enough when I have to go to the doctor's office or am joining a friend for a cuppa.

So if you are in the same boat as myself, do yourself a favor and check out Champion's jersey banded knee pants.